Leading rally organiser HERO-ERA hopes to raise £250,000 this summer for ACE-SMA, a new charity raising awareness of Spinal Muscular Atrophy (SMA). Registration is now open for the ACE in Motion Tour, which will set off around motorsport valley on 2 July.
The money will help to fund a two-year clinical trial with Oxford University to prove the effectiveness of physiotherapy and drug treatment for the rare genetic disease. SMA affects young children most severely, and only recently has early diagnosis and treatment been successful in improving survival rates.
Laurent Servais, professor of paediatric and neuromuscular diseases at MDUK Oxford, will oversee the £500,000 trial having helped pioneer treatments in Belgium that nearly eradicated SMA in some areas of the country. “Screening at birth allows us to begin treatment before symptoms appear,” he said, “and in this case we can stop symptoms appearing at all. Currently we have begun doing this in Oxford and we hope to extend this to the rest of the UK.”
The funding will also provide physiotherapy to 20 symptomatic children, many of whom have spent their childhood in wheelchairs.
The tour has been devised by Tomas de Vargas, chairman of HERO-ERA, and will start at HERO-ERA’s Bicester Heritage home before setting off to Williams F1 to visit the heritage collection. The route will return to Bicester Heritage.
The Arrive and Drive fleet will be made available to hire, with all of the fees going direct to the charity.
“We will be doing everything we can to help with ACE-SMA’s £500,000 fundraising target,” added Tomas. “We would love to be able to contribute to half of that goal, and that is our own personal target. It won’t be easy but there is no price really when it comes to helping children suffering with SMA.”
